May 23, 2016
This past weekend was rough – it was rough for Garrett, which in turn means in its own way it was rough for each one of us. We spent a better portion of forty eight hours surviving, not living, through this weekend. My boy struggled greatly this weekend, and although we are still not quite sure what triggered the difficulties, we are slowly recovering from it, but more importantly he is starting to come back to himself today. This is not an easy topic to write about, as there are many aspects of this that I keep private out of respect to my family, and most importantly out of respect to Garrett. But it is one that needs attention called to it time and again. I fully admit that this past year, with its ups and downs has been quite a good year, and we sometimes become complacent to the reality that when triggers come, and difficulties arise, communication stops and behaviors take over. And there is nothing worse on this earth than watching your child suffer while standing by, often helplessly, and waiting for it to pass.
We had forty eight hours of this – some families have far more.
Self-injurious behavior is not a topic any of us like to openly discuss, and is usually the quiet conversation shared with a trusted individual, usually not even with family members or even close friends, because in all honesty, only those who experience it directly understand the gravity of the situation. For me, this is one of the hardest aspects of Garrett’s autism and even though the behavior passes, it leaves tiny scars on my heart that will never fully heal. I am his mother – my job is to help him to the very best of my ability and then some, and yet there are times that no matter what I try to do, there is no solution, no “fix” to this part. And as hard as this is for me to watch and digest, I cannot even fathom what my child is going through in those moments that he resorts to behaviors that cause pain and injury to himself. And as the dust settles from this weekend, my mind begins to think of all the other families that experience this as well and this is where my words turn to them.
To all the families, whether right now, or in the past, or maybe down the road – have those periods of survival mode – you are not alone. This is hard, probably one of the harder periods in your life and you need to know you are not alone. Because I know how in those moments of pain and feeling utterly defeated by what you are witnessing and your inability to ease their pain, you can feel so very alone and so very scared. And that is why I say to you – reach out to a friend, a family member, someone who you trust – or even another parent that “gets it”. Because in those moments, you are going to need support from those around you – and there is no shame in that. This is real and it is scary and it is so very heart breaking.
This evening, as I type and watch my children actually playing together – board game and all, I feel the tension starting to loosen ever so slightly from within as my memories of the struggles of this weekend start to fade. This is not “over” as inevitably, as time passes, more struggles and triggers will creep in, and new waves of behaviors will come. But right now, I am not going to worry about the future – I am just going to enjoy these moments. I am going to breathe, put my feet up, and watch a very intense game of chutes and ladders unfold because seriously, isn’t that just the perfect metaphor for this thing we call life? Sometimes we climb high, sometimes we slide down in an instant, but the point of it all is to enjoy the game no matter which twists and turns it takes. I don’t think they could have picked out a more appropriate game tonight.... for them or for me.
March 22, 2016
To the mother watching my son,
I see you over there, watching with a somewhat quizzical look, afraid to ask questions because you don’t want to offend me, and trying really hard to hide that your eyes keep shifting back to my son. I know that look because many years ago, before my son came into my life and I began to understand what autism was and wasn’t, I had that look too. I was scared of children that were “different”....I didn’t know what to say to them, how to act, and I definitely did not know what to say to a parent. I may have been guilty of saying “I’m sorry” once or twice, something now that I deeply regret as it has been said to me on occasion and I now understand what a horrible phrase that can be. So please let me tell you about my son and let me help you learn how to enter his world – because I promise you once you are in, it is for life and in all honesty, it is a pretty great place to be.
He is different – there it is, I said it. Yes he is different – not less, not weird, not more special than your child, just different. I like to compare this to different ice cream flavors...we are all different flavors really, each bringing different elements into the world and all ultimately bringing happiness and joy in our own ways. Yes, he has autism and no I do not know why. Believe me there are days I wish I did, but ultimately that is not important to me. What is important to me is ensuring that he lives and experiences life to his fullest potential, whatever that may be.
As you watch him, you will see that sometimes he spins in circles, a ritualistic behavior that I have come to realize calms him when he is feeling overwhelmed. And often, loud noises, especially televisions are too much for his sensory system and he might yell until it is turned off. But please know this is not my child demanding to have his way, but rather this is his way of trying to stop the over stimulation that could quite possibly be causing him physical pain.
He might not say much to you at first, in fact he might not acknowledge you at all – but do not mistake that for not listening, because believe me that is far from the truth. My boy listens and hears everything going on around him, often times referring back to things said from days before. And even though he might not give you the acknowledgement in the traditional form that you are looking for, he will remember. He will remember that you spoke to him. And it may not be the next time, but eventually he will speak back to you – when he is ready. Please – do not rush him and please be patient enough to wait for him because he is worth it.
When my boy is happy, a certain warmth and love emulate from his entire being and when he laughs that pure and uninhibited laugh, it is with his whole body, something that is amazing to see and impossible to not get caught up in. When you become one of “his people” you will find that his infectious spirit stays with you even you are apart. I really cannot explain it – I can just feel it even now as I type this while he is spending his day at school. Yes I am his mother, so I might sound a little biased, but trust me “his people” love him just as much as he loves them.
I know that often times things we are not familiar with can cause fear and uncertainty. I was once just like you so I recognize the look on your face and the questions in your eyes. And for that reason I am reaching out to you to say it is okay to ask questions and no, you will not offend me. What will offend me is if you turn away and do not try to open your heart to an incredible child. He is worth it, as is every child and adult on the spectrum. Take the time to get to know him and to find a way into his world. And believe me – you will not regret it.
February 1, 2016
I had every intention of sending my lovely ladies that run this webpage a blog entry today – one written on growth and learning, one that I poured over writing for the past two days. And then, this morning, as I was scrolling my facebook feed I saw a headline.....
“Disturbing allegations -- a local school was raided following reports of physical and emotional abuse of students by school staff.”
I immedaitely clicked on the link, as this was news coming out of Massachusetts, and what followed was even worse...
“...Police said the operation was conducted Saturday evening at Eagleton School, a private facility for boys ages 9-22 with cognitive, behavioral, and developmental disabilities.”
The Eagleton School website defines their school as a private year-round residential, psycho- educational treatment facility for boys and young men with Autism, Asperger's Syndrome, Pervasive Development Disorder, Communication and Cognitive Delays, Behavior Disorders, Emotional Disorders, and Learning Disabilities. Knowing this, my heart sank as I read further that....
"Today's events are part of an investigation into allegations of physical and emotional abuse on students by staff at the school that was begun by the Great Barrington Police Department earlier this month and has involved multiple agencies," police officials posted on the Great Barrington Police Department Facebook page...”
Taken from masslive.com
As I began to search more articles, I came to find out that a total of 5 people have been arrested, 4 charged with abuse, and a fifth charged with intimidation of a witness. Five people that were trusted to guide, educate, and nurture these students and there might be more.
This has got to stop.
We as parents try to do our absolute best for our children, from finding the right therapies and programs, to assembling the right team to help each child grow to their full potential. And we trust these people with our children – a trust that is not given lightly, and we often sit back, hold our breath, and hope for the best. Many times things work out. But then, I read this and see how it can go so gravely wrong. Far too often these children are preyed open, seen as easy targets to abuse whether it be physically, emotionally, or even sexually. Thank goodness that the allegations were taken seriously in this instance, and arrests have been made, but the arrests cannot undo the damage that has been done. And how many allegations fall on deaf ears?
I know many will read this and think we are safe up here in our county, far from the major cities and crime, but I guarantee you we are not. How many parents of students at Eagleton School probably felt the same way, way out in western Massachusetts until this past Saturday, when they received the news that the school and people they trusted to care for their children was being raided by fifty plus law enforcement agents? Inevitably evil can and will find its way to all corners of the earth and it is our job for our children’s sake to be aware and to always listen to them – whether it be verbal or nonverbal. Our children will tell us in their own way if something is wrong and we must listen. Because even though we like to think that everyone they come in contact with has the best of intentions for them, the day may come when that is not true and we need to be ready.
This is horrible, and scary, and a topic that is not easily discussed, but I could not ignore this one today. And this hits way too close to home, as I am sure it will for many of you reading this. This must stop. We must hold individuals accountable for their actions and we have to let those that may prey on our children know that we will not allow them to become victims.
My prayers and thoughts are with the victims and their families today. May they work towards recovery from these things that have happened and may they know that although there is evil in this world, there is good as well. And I pray that one day that good will overshadow the evil.
December 29, 2015
As this year is speeding towards its close, and the New Year is on the horizon, I find myself finally able to slow down long enough to translate the thoughts in my head onto paper. These past few months went from a typically fast pace to downright lighting speed as returning from the conference lead into Thanksgiving, and then into the Christmas season. From holiday gatherings to last minute meetings, to enjoying the season with my family, I haven’t really had time for much else. Every time I tried to make my way towards the computer to write, something inevitably pulled me away. Christmas as always, was magical and joyous, filled with that wonder and awe that only young children can bring in such a special way. Over the past couple days, with the children on vacation and no appointments scheduled, I finally feel like I can finally take a breath before it all starts up again.
After enjoying a very lazy day, filled with pajamas, brownies, and family cuddles, Garrett took a break from singing yet another chorus of Jingle Bell Rock this afternoon, and climbed into my lap and to sit with me for a moment. As I told him he is getting bigger, a serious look took over his face and he very sternly replied, “No I am not. I am going to get smaller. I do not want to grow up.” He added that, “growing up is too hard”. And as he walked away, visibly upset, he retreated to my bedroom to hide under our comforter, his favorite place to find peace and quiet, and a little re-grounding when needed. And my heart broke a little inside.
As so many of us find ourselves preparing for a new year, “new beginnings and resolutions”, times of change and growth, here is my son, dreading getting older, hoping to reverse time to head back towards being a baby as he informed us as well. I cannot blame him for not wanting to grow up, and if I could I would do everything in my power to stop this for him. I fully admit we are in the “easy stages” of this right now – a sort of grace period if you will. We made it through the self-injurious period that came between 2-3 years, we made it through countless sleepless nights that are few and far between now, and he has been on a steady incline of growth and development for the past couple of years.
Don’t get me wrong – autism is not a walk in the park, but compared to where we were 4 years ago this is pretty great. But, I know what is coming down the road and it scares me. I know that all bets are off as he begins to mature and his body begins to change, being pumped with testosterone as any boy is when those years come. I know that middle school and junior high will bring classmates trying so hard to be cool that they will not give second thought to who they hurt along the way, and all those people he calls friends right now may not be there down the road. And I know how people judge....it is one thing to see a 6 year old throw himself down on the floor, having a meltdown because he is so completely overwhelmed and cannot handle the overload of sensory triggers, but it is far different when seeing a thirteen year old young man on that floor. And I know that all these body changes can also potentially trigger his seizures which we have had under control for the past two years now. I know all this and I am scared. And I think he is too. I don’t know to what degree that he understands what is coming, but he knows it is not going to be easy. And my boy wants no part of it. And I really can’t blame him – I wouldn’t want to go back to that time period myself and I can only begin to imagine what his experiences will be.
So tonight as I process all of this, I am making a pledge to both of my little darlings, triggered by both of their needs to be little for a little while longer. That going into this New Year, I promise to make sure that I enjoy every moment, every giggle, and every single thing that makes them little. I will encourage them more than ever to have fun and enjoy each day as it comes. It is okay to be silly and wild, and sometimes even break the rules - to have brownies and ice cream for breakfast, have water fights in the house, sometimes stay up past bedtimes, occasionally jump on the big bed, and always tell
each other how much we love them. I will slow down because they need me to slow down, as much as I need me to slow down. And although I can’t stop him from growing up, I can make sure that his childhood doesn’t go faster than it needs to. And even as the days start to pass by, and he inevitably moves forward on his path of life, I will be there as long as I can by his side and holding his hand. Because although he may grow up, he will never outgrow me....nor I him.
October 25, 2015
For at least ten years now, my husband and I have sort of formed this tradition, or routine if you will, of what we do on a Saturday night at home. It usually consists of junk food, drinks, and claiming nothing is on television as we quickly find and switch to COPS on any station we can find. Sad, I know, but we love this show – not because it is award winning television, but because it seems to wind us down at the end of each week. Sometimes we just use it as mere background noise while we fall guilty to scanning our emails and getting in one last candy crush round before talking about the week, and sometimes we actually watch the episodes, especially when they feature familiar places(ahem Lowell we are talking about you). But last night, much to my surprise, COPS brought my husband and I to a conversation that needs to happen.
As we settled into our routine, I found myself aimlessly scanning facebook posts, as my husband conquered Sparta on his phone(his game of choice), until my husband said, “that guy has autism”. As I shifted my attention to the tv, I saw a man flapping, fearful, and crawling on the sidewalk. And I saw an officer give verbal commands, none of which were listened to, and I knew right away my husband was correct. As we both sat there silently watching, the officer repeatedly told the man to turn around and put his hands on his back, and when the officer than grabbed the man’s arm he began to fight. For my husband and I, completely outside of the moment and watching, we could see he wasn’t fighting to hurt the officer – he was fighting to save his life, a life he felt was in danger. But to the officer in the moment with this man – he was fighting, and the officer did everything he could to subdue him, including using his taser. The officer had absolutely no idea what he was dealing with, and cannot be faulted, but it was disturbing to us as we watched it unfold. After he was finally subdued on the ground, the fear in his eyes was screaming out, but yet he muttered not a word. EMTs arrived on scene, none picking up on any of the very clear signs of autism, strapped him to a stretcher and carted him off to the nearest hospital. As the officer retold the story to his supervisor, he said, “I kept talking and there was nothing. The light was on but no one was home.” And he ended by saying to the cameraman, “they will take him to the hospital to take care of all the drugs in his system”.
I will start this off by stating that I, in no way, am speaking out against that officer or the others that responded on that scene. He gave an order, it wasn’t listened to, and he proceeded completely as he should have, and for all involved they are very lucky that it ended without the loss of a life. By the end, four officers and two EMTs were on scene, and not a single one recognized the signs that this man had autism. Not one of them. And it is not their fault – they are not being trained. And that is scary. I am speaking out against the lack of training that exists and the danger that poses to not only autistic individuals, but also all first responders. The outcome of this incident could have easily been far worse, and in many cases it is. With the increase of autism comes the increase of incidents that occur with individuals that are not trained and educated to handle them. I cannot help but think what if it had been Garrett on the street, not responding. He would have been terrified if someone tried to grab him, and he would have tried to fight as a child, so I cannot imagine what it would be like if he were a grown man.
All day I have been replaying this scene in my head, wondering what it is going to take for more agencies to begin training on this very topic. I cannot say enough about the training that Matt Brown has been conducting throughout the country with his ASET program to help first responders recognize and work with autistic individuals, but obviously we need more. I will do everything in my power to
continue his trainings in our county, but we all need to do more. We as a community – the parents, caregivers, siblings, loved ones, and friends of autistic individuals need to talk about this. We need to ask for trainings and we need to do it now. Because it could be your loved ones that find themselves in this very situation. And they need to come home safely, as do the first responders.
My plea tonight is for all of you to start these conversations – talk to a cop, an EMT, a firefighter, or even just a friend. The more we talk, the more people will begin to learn, understand, and become educated. It will not happen overnight, but in time if it helps avoid one a situation like the one I watched unfold on a national television show last night, then it will be worth it. Think about your loved ones – then start the conversation.
In the morning, I will be reaching out to some first responders to talk about more trainings in the area. What will you do?
For more information on Matt Brown’s ASET program:
October 23, 2015
Over the past two weeks, I have started and stopped at least ten different blog entries. From a harvest break filled with appointments to the headache of back to school after a three week lapse and beginning routines all over again, I just couldn’t find the words. I have felt drained and exhausted, and unable to put my thoughts down to even begin to scratch the surface of what has been going on in our day to day lives here. And to be honest, I just haven’t wanted to as I have found myself struggling emotionally over the course of these weeks. And so much of the difficulty was my own fears and emotions weighing me down.
My struggles came to a head with Garrett’s updated evaluation that we scheduled over his break this year. An appointment that had been rescheduled by both myself and the office quite a few times, most of which I didn’t mind. I love clinic, don’t get me wrong, and I cannot say enough about our experiences there. From the first day of his diagnosis, EMMC developmental clinic has been phenomenal. But with clinic comes truth and truth is laying it all out – the good and the bad. It means with each passing year, comes the reality that I cannot freeze time at this period of his life. I so want to be able to keep him here, at six, for as long as I can. His hardest struggles of not wanting to write his name are far easier than what I know lies ahead as he grows. I look down the road and I see middle school, puberty, and the harsh realities of what goes on with all children at that age. And then I look further and I see high school graduation, and then what – college, independent living, group home setting and my fears grow. Because then I look further and see the inevitable truth that one day, my husbandandIwillbegoneandhewillbeagrownman. ItissoeasyasIlistthisallouttoseehowmy fears grew so rapidly going into the clinic appointment two weeks ago, even though I knew there was no new diagnosis or disorder that would be suddenly found at this visit. It wasn’t so much the visit, but the reminder of all the unknowns that we face each and every day. And I struggle with that....a lot. Reality is that the future is one big unknown. And as I was becoming fixated on all things I couldn’t control, I was starting to miss out on the present.
For years my father has sent me the serenity prayer in my more difficult times, usually when I have needed it the most. And many times, he recites it to me over the phone when he knows I need to hear it. And sure enough, when we returned home and I called him crying over all these thoughts circulating in my head, his words began:
God grant me the serenity to accept the things I cannot change; Courage to change the things I can; And wisdom to know the difference.
Many times in the past I have grown annoyed, and blown off his attempts at helping me by changing the conversation. But this time I listened....and it helped. Not immediately, not the next day, but over the course of the week that followed, replaying his words and his “go to” prayer helped. The fears are real and exist, but I feel like they are sort of put back in their box with the lid on tight. They will surface again down the road – but today they are tucked away. I cannot change or control anything other than what I do today and for today I am going to enjoy every moment of my boy being six. His new found love of The Great Pumpkin, carrying his carved pumpkin Jack up to bed with him, and his tight hugs and little voice saying “I love you” at the end of each night. That is what matters and that is what I have today. And today that is more than enough.
September 6, 2015
With school and friends comes the inevitable and often stressful tradition of birthday parties. Lots of children, overly stimulating situations, excess amounts of sugar, presents intended for the guest of honor that my son will no doubt try and open if given a chance, and for Garrett, rather chaotic situations that can go either really good or really bad in one second flat. Personally, I love birthday parties, and continually push him and his exposure, but I will admit, I am usually on high alert from the second we enter until the time we are leaving, and sometimes it is more like fleeing. And one of my biggest struggles is I worry about the perception his classmates will have if he struggles. Although they know him and they are with him every day, I still worry as to how accepting they will be. As the hours led up to the party today, I was prepping my boy for the party and saying a little silent prayer that it would go well today for him. When we arrived, he took the time to scan the room and then retreated to a table with his ipad, up until it was time to yell surprise for the incoming birthday girl. He was all excited, standing perfectly quiet with his friends, reminding them to be quiet, as the shout rang out from a chorus of small 1st graders, my boy dropped to the floor covering his ears and crying. I got over to him as fast as possible and helped him up as the tears were still streaming from his eyes, and reassured him although he was not okay that moment, he would be soon. I glanced around quickly only to see that not a single child flinched or was looking quizzically at him, and I have to admit I was relieved. He brushed himself off and said he was ready to play. Deep breath and we were ready to try again.
As I ushered him over to the first table activity, I could not have been happier. I am sort of in love with the mother than organized the party today, because I think she is probably one of the most brilliant organizers ever – I LOVE parents that set up stations as parties, because they help to eliminate the overall sense of chaos. And since we are friends and she knows my son so very well, I like to think he might have been in the back of her mind when she included the playdoh today. As he sat down with a couple of his little friends, one of the older girls helping out asked him his name and he didn’t answer. And what happened next was simply wonderful. The beautiful little birthday princess turned to the girl and said “he is not going to answer you, but it is okay. He is autistic.” So matter of fact and yet so loving – it was not the first time I have seen one of the children in his class step in when someone does not know right away that he might not answer them. As the children went on playing, I just sat there feeling so blessed that these children understand him.
As the party progressed and we sat down for cake and ice cream, a couple of the little boys from his class were sitting across from us and started talking about birthday parties. At this point Garrett was so enthralled in his fourth helping of ice cream, there was no pulling him into any conversation. But as I was listening to them talk about the parties they were planning in their heads, my heart started to sink knowing that this conversation was among them and Garrett was not going to join in. And then again, another moment happened – one little boy turned to me and said, “So what super hero is Garrett going to be? He could be Thor or Superman or.......” As I replied saying he has a Captain American costume, they all replied with “awesome we have Captain America now” and they kept chatting about the party Garrett would be attending with them. And as Garrett took off to take a little alone time, one very special little boy said, “So how is Garrett doing today?” And he asked it with such a genuine interest that I was so taken aback I asked him to repeat himself. When it was time to leave today, Garrett thanked his friend and waved goodbye, happily humming a tune to himself on the way home, an indicative sign that he was in a very happy place.
I know Garrett needed the party today, as the social interaction is so important and crucial for him to continue on his positive path forward. But I needed that party today too. I needed to see those children embracing him and including him, something that so often does not happen in our world with a child that is seen as “different”. We all could learn a lot from these little first graders – they sure seem to have a sense of understanding and acceptance far beyond their years. I must say, I think Garrett and I are both looking forward to the next party with this little crew – it may not go perfectly, but it will be filled with children that know him, understand him, and most importantly include him. And that is what will make is awesome. And maybe a little extra playdoh too.
August 30, 2015
This past week I was asked to speak to a classroom full of lively, little minds about a subject near and dear to my heart. As I started talking about autism and prepared to read a book, a little hand shot up and I was told, “In my old school, all the autistic kids were put in one room”. As I explained that every school and every child is different, I informed him that there was an autistic child right here in his room with him. As I read the story I brought with me, often times little voices interjected, full of support and comments to mimic the examples set forth in the story. At the end, I asked if there were any questions and the same little hand shot up again and then it came.... “I think they are all weird”. Wow.....I was not anticipating that one at all – and the overly protective mother inside of me wanted to scream at that little child for not being more compassionate. But that same motherly side reminded me that this child is six and obviously has never been exposed, nor taught about what it is, so of course in his little six year old mind it is weird, and different, and maybe even scary. I turned to the teacher and said “I have more work to do” with a smile, and left an extra book for this child to have in the classroom to help teach him more and hopefully help him to understand and accept all those around him. I came home that afternoon and thought a lot about that child and the innocence behind his comments. I thought about how he is still so young and has a great opportunity to learn and to grow over the coming years. Maybe he will change his views, maybe he won’t – but I can hope.
The next day, as I was still mulling this over, a friend tagged me in a truly wonderful blog post written as an open letter from a mother to her autistic son’s preschool class.
This letter said everything I felt and thought the first year Garrett went to school, and I could never have done as good of a job expressing all this as she did. But then, the comments started to come....and as I started to read them, my heart sank with the amount of negative feedback this post received.
“I’m not trying to be rude but why does it seem like everyone has an autistic kid these days?” “...I do believe it is a go to diagnosis”
“....the length of the road depends on how you go about it....”
And this one got me the most.....
“That situation is exactly what makes me nervous I don't want my kids getting hit with a flying chair. Half the problem nowadays is people assume autistic means no self-control so they don't even bother trying to teach the child to be nice”
Pure and simple, this is ignorance ladies and gentlemen at its very worst. Autism is not a go to diagnosis, it is a diagnosis that is being given to more and more children because the numbers are climbing. The “length of the road” does not depend on how we go about it as parents – this road is not going to suddenly stop one day. There is no cure, there is no magic food or medicine that makes this suddenly “go away”. There is no one size fits all mix of therapies that will eliminate all difficulties. And finally, autism does not mean flying chairs from every child or person on the spectrum. Imagine if that were true – with the amount of people on the spectrum nowadays, we would be covering and ducking every minute from another flying chair, and that is just not the case. And it has nothing, absolutely
nothing to do with teaching our children to be nice. I think somewhere along the way, you who put up that lovely close minded comment, forgot that lesson yourself.
I can easily accept a child that does not know better, that obviously has had minimal to no exposure with autism saying that those on the spectrum are “weird”. I hope that he will change his views and I will do everything in my power to help show him that these people, like Garrett, are not weird, but rather different and beautiful in their own ways. But these adults, I struggle with. These adults are the reasons why a six year old says they are weird and will grow up to believe it. They are the reason why so many families worry about the whispers and the judgmental looks they get when out in public with their autistic family members. I worry that for many this will go unchanged and their ignorant mentalities will carry them through many years to come, but I still hold out hope that maybe a few will gain exposure and understanding.
I plan on revisiting the classroom I joined the other day over the coming year, as well as many others in an effort to help raise awareness and acceptance at an early age. If we can open their young minds to a view of love and acceptance, then maybe, just maybe they will in turn help the adults around them to do the same. One can only hope – but hope can be a pretty powerful thing. Hope can bring about change. And it is time.
August 25, 2015
School has started here in our little town, which brings a new classroom, new teacher, new bus schedule, and new routines for Garrett. This means chaos and chaos is hard. Sometimes, it is downright horrible. We made it through the first three days last week with a few small hiccups, but nothing major and I think everyone involved breathed a little sigh of relief, including Garrett. Yesterday, again was a great day, but I know my son and I know at some point all this change is going to hit him, and it is going to hit hard. And sure enough that day came today. As the phone rang and I saw the caller id, I knew something had happened and my heart sank...
“Mrs. Swanson? This is Larry Worcester from the school....I need to talk to you about a little incident we had this morning with Garrett.....”
As he spoke and described what happened the words started to blur as quickly as my vision from the tears forming. I didn’t need an explanation – I already knew. Garrett was overwhelmed and hit his breaking point, and unfortunately lashed out at the closest person to him. He assured me the situation was diffused and there was nothing I could do except continue to talk to him tonight about how to try and work on finding ways to express himself in more positive manner. I hung up the phone and cried for a good five minutes and then sat even longer. Garrett has very much come to understand that hurting others is wrong, and you can see anguish and shame on his face after an incident like this occurs. I so wanted to run immediately down to the school to comfort him, but I stopped myself. I cannot rescue him and I cannot rush to his side every time something goes wrong. But that is an incredibly hard pill to swallow. I waited a little longer and called the school to talk to a very special woman in his life that understands him and over the past three years has formed quite a strong bond with Garrett. I started to fill up again with her as she described to me what happened, but then she told me that he sat down in her office and not only told her what he did, but he apologized as well. Even with these huge steps I was still struggling and she simply said,
“We are going to get thru this”
And in that moment my need to run down to school diminished. Not only because it was exactly what I needed to hear, but because it was said with genuine feeling behind it. When she said “we” she meant it. I speak a lot about how lucky I am to have such incredible supports at our school and I stand by those words each and every day. The faculty and staff are not perfect, nor am I, and we all will inevitably make mistakes along this path we share with Garrett, but I can say without doubt that they care. They will do everything in their power and probably beyond to assist my child and for that I am forever indebted to them. These people could merely go in each day, do their job and go home, but they chose to do more because they want to do more. And that means something. Garrett is blessed to be surrounded by such support, as is every other student in our little school. We are lucky here, this doesn’t exist everywhere else and believe me I know, having lived in various parts of this country and hearing the horror stories of lack of supports from schools. These people in my eyes are heroes and that will never change. And to the one very special woman – thank you. Thank you for believing in him from day one. Thank you for each time you sneak a peek into his room, knowing that I might call to check, thank you for being his ending routine each day as he hugs you goodbye. Thank you for caring. Because it means everything not just to me, but to Garrett. We will get thru this – all of us – together.
August 11, 2015
There is nothing harder in this world than seeing the look of defeat in your child’s eyes. Tonight, as I held Garrett after a difficult period, the house quieted, and he pulled back in order to just stare deep in my eyes. And sadness took over his beautiful face and a heart wrenching look of defeat. Although he did not say the words, I could hear them loud and clear. “I’m sorry” he was shouting from those blue eyes and I pray that mine answered with “I know my angel”. He buried his face into me, and snuggled in as tight as he could, and we sat there, rocking in the dark silence. I told him over and over how much I loved him and how we would get through this together. I can only hope that those words are enough to help him realize that even through his perceived failures, he gains strength and perseverance that so many in this world will never skim the surface of, and that is what truly matters. And I hope that one day he will look back and know how incredibly proud I am of him and how unwavering my love is for him, even during some of the most trying times. Once the turmoil passed and I could feel that he was calm, I took him back to his room, and as I placed the blanket over him, the little words came – “Mommy – will you stay with me?” And as I said for just a minute, his little hand found mine, and he said “I love you”. And just like that, he drifted back to sleep and I sat beside him in the darkness as the peacefulness overtook him.
I came back down the stairs and immediately found my mind going back in time to a quote I read about a year ago. It was:
“It takes unimaginable strength to continually endure, persist, and overcome. People with disabilities aren’t weak. They’re the strongest human beings you will ever meet.”
Three simple sentences with such an impactful meaning that resonate within my heart this evening. Although Garrett may think of tonight as a defeat, I know my son will wake in the morning and do everything in his power to make tomorrow better. And I in turn, will pull out all the stops, and go above and beyond to make tomorrow amazing for him. Because what he does each and every day is incredibly difficult and exhausting – he wakes every day with a smile and a determination to have a good day. So much is asked of him through therapies, carry over, and soon again school, and each and every morning that boy wakes up with the biggest grin and a heartfelt “good morning Mommy.” No matter what the previous day brought, he is up and ready to go at it again – that is perseverance. That is determination. That is strength.
So tonight as I settle in to call it a night, I close this with a message to Garrett and to all others on the autism spectrum – may you all know how truly amazing you are. I have the utmost respect for all of you and I only hope that I can gain a fraction of the strength you all possess. You all try your hardest in a world that so often does not take the time to understand you. To my sweet boy – you teach me in ways I never dreamed possible and you never cease to amaze me with your continued growth and determination. Never give up on yourself and never stop believing in own strength because you will move mountains one day. I believe in you – always have and always will. I love you.
August 2, 2015
This evening was hard. I won’t get into the details as to why is was so hard out of respect to Garrett and his privacy (there are some things I will never share for those reasons), but it was push you to the absolute edge of your limits hard. And as I felt the weight of the stress increasing and the walls starting to close in, I did the best thing I could. I made sure both of my children were safe and occupied, I went into my son’s room, and I called my husband and said, “I know you can’t come home from work, and I know you really can’t do much right now, but just tell me you are here and I can just cry to you for a minute.” And that is exactly what he did– he listened, he promised it would get better, and told me I was doing an amazing job and I was a great mother. I collected myself up, thanked him for being there when I needed him, and then hung up and went back to the children. Such simple things said over a phone, but yet exactly what I needed in that moment.
You might be wondering why this is important enough to write about and believe me, it is so important that I wish I could type this entire entry in a bolded, gigantic font size. It is important because I am here to tell you it is okay to say this is hard. It is okay to say “I need help” or “I need to cry” because there are moments that you will need to do just that. There is absolutely no shame in asking for help and I urge all of you to realize that sooner than later on this journey of autism that we share. From the very beginning of this I had a handful of people that was made up of my husband, my parents, and my sister that were my “people”. They were the ones I would call when the world felt like it was spinning out of control, they were the ones I reached out to when I just needed someone to listen, and they were the ones I called when I just needed to cry when it all just felt like it was too much. I added another person along the way to my handful, a true friend that fate brought into my life, who from personal experience, knows each and every emotion that I have felt over the past three years. Each of these people have taken phone calls, messages, or emails from me at all hours of the day and night and they have given me strength along the way to pull through the hard moments. It is because of these people that even when the hard moments hit, I know they will pass and we will make it to the other side. And it is so important that you all find your people as well. So often autism can feel so isolating, not just for the individual, but for the families as well, and it is work to fight that. But you have to be willing to reach out and to say “I need help” and I promise you that even in the darkest of moments, someone will be there and it will bring you the comfort you are so desperately seeking. Never be afraid and never let your own personal pride get in the way of asking for help when you need it the most. We all need support from time to time and true strength is realizing when you need to ask for help.
I am lucky to have found my people early on in this and to them I am eternally grateful. And tonight, as the world winds down, and while my children are peacefully sleeping I close this entry with a simple thank you. Thank you to Matt, Mom, Dad, Erin, and Lisa – you will never know how much each phone call, message, or email has meant over these years. Without you five I would have undoubtedly crumbled under the pressures that I have faced over the past years and I cannot express how much you all mean to me. You are my people – my handful that are there not only in the good, but the also the darkest of times as well. And you are all there with an outstretched hand and a shoulder to lean on and that means more than anything else in this world. To everyone else – I pray that you find your people and that you find the courage to reach out when in need. If we were meant to do this alone, there would be no one else on this planet. There are people all around you – willing and able to lend a hand, a shoulder, an ear, and a heart. All you have to do is ask.
July 30. 2015
As parents, we like to fix things for our children. We carry these “tool boxes” with us, filled with life experiences and wisdom from our own journeys, and pull out what we feel is best suited for each situation that comes their way. Given with the best of intentions, these tools that should be meant to teach, sometimes become tools for us to take over and build the projects ourselves. And it is a constant struggle for many parents to realize that until we hand over the tools and let them deal with situations on their own, that their true growth will not begin. I think it is safe to say all parents struggle with this, and when it comes to Garrett, I fully admit I struggle greatly. I so often find myself hovering, ready to spring into action and resolve a situation faster than the blink of an eye in order to maintain a calm and tranquil environment for Garrett. I know that one of his greatest struggles is using his words when he is upset, so I tend to quickly intercept any situation that might agitate him in order to fix it for him. I want to keep him safe, and I want to keep him from striking out at whomever is the agitator in the individual situation – often times the child or adult does not even realize what they are doing it difficult for him to handle. And as I watch my boy tighten his body, and lock his eyes on the person, I prepare to lunge and grab him as he dives for the person to forcibly show them how upset he is. This scenario has been going on for years with Garrett, and it is something we constantly work on, with very little progress. He so struggles with maintaining his words when he is upset, and each time that he does strike out at someone, afterwards I see the look of defeat on his face, knowing that he should not have reacted in such a manner. And each time we talk about it, pulling all the tools out to help him understand, and many times I wonder if we will see progress. I stepped in yesterday to prevent him from hurting someone else that had no idea that he/she was causing him to experience some difficulty. I felt good about diffusing the situation, until I really started to think about it last night, and realized that I am not helping him the way I should be. The more I step in to move him away from the situation, the less chance he has to even try and use his words. I was doing it wrong and my actions were hindering his. No, I should not let him hurt someone, but I need to give him the chance to stand on his own, without me rushing in and that is a hard thing for me to grasp. But, I realized he needs me to start to let go and have some faith in his abilities. I need to trust that he is going to pick up the right tools – it is time to give him the box.
This morning, I did just that. As Garrett settled into his morning activity, an older child came over to him, and immediately entered Garrett’s space. I watched from a distance, safe enough to act if he needed me, but far enough away that he did not notice I was there. I watched as this boy took the toys Garrett was playing with, and I watched horrified as the boy tapped on Garrett’s face when Garrett did not respond to his question in an effort to get his attention. I thought I knew what was coming, and as I took a step forward a little arm shot forward with his hand out, and I heard Garrett shout, “Stop it!!! Go away now!!” I stopped dead in my tracks and realized my son just stuck up for himself – with no hitting, no biting, no lashing out, but rather with his words. And what incredibly glorious words they were – no sugar coating, just straight and to the point. The child he yelled at immediately moved away, and Garrett happily went back to playing and continued on to have a fantastic day. Such a quick moment but yet such a powerful one in his journey. And, a necessary reminder to me of how much he has grown and continues to grow each and every day. Letting go and stepping back is so hard, but if I do not let him try, he will never succeed. I know this is just the first of many scenarios that I will want to step in and fix things for my child, and I will come back to this day over and over to remind myself that is not my job to rescue, but rather my job to prepare and then believe in him. There will be times that he will fail, but even in those failures he will grow and move forward in his journey. And I will be there along the way, carrying the tool box and ready to hand over the tools for him to succeed.
July 17, 2015
Comfort zones are often our “warm and fuzzy” places that we all like to stay within the walls of, usually making excuses to not venture out, but rather stay safely put. These imaginary boundaries that we create allow us to live our lives day to day, but rarely do they allow us to grow. One of the biggest challenges of life is stepping out of these zones and embracing the unfamiliar that awaits us. And no matter the outcome, whether it be soaring to the stars or crashing and burning horribly, the fact remains that it took more courage and strength to try, rather than miss an opportunity, trapped in the confines of our self-doubt and fear.
That being said, my family is very familiar with “the comfort zone”. We like the comfort zone – it breeds routine, it breeds stability, it breeds ease in an often times chaotic life that we lead. But this lovely little zone we enjoy so much doesn’t really do any of us, especially Garrett, much good. Yes, routines and stability are wonderful for him, but I can never expect him to grow if I don’t allow him to really live and experience all that life has to offer, and by constantly holding back from various experiences in life, I am stifling his spirit. So when an opportunity presented itself last week to step out of our comfort zone and go see a musical while on vacation, I was downright terrified. I wanted to run and hide under the covers, cancel the plans, take the easy way back home to my zone, and say forget it all. But, my husband urged me to take the step with Garrett, simply saying, “What is the worst that could happen? A meltdown – we got this, don’t worry”. As much as it often pains me to admit, my husband was right – and it was time to make a decision. I chose to step out of the zone and give it a shot. What followed was a truly amazing experience that prompted me to send the following letter to staff at the Weston Playhouse Theater Company in Weston, Vermont.
To the cast of Junie B Jones:
So often in this world, people are so quick to share negative feedback rather than positive, so I must take a moment to share with you all some very positive feedback after attending your matinee performance this afternoon. Three years ago, my son was diagnosed with autism and any sense of “normalcy” went out the window of my family’s life. We find ourselves visiting family this week in Springfield, and by chance I came across an advertisement for Junie B Jones the Musical, and immediately thought of how much my seven year old daughter would love this, since she had just finished the books. But then my mind went to fear of how my son might handle the performance, and what is an easy decision for most families, became a difficult one for us. Do we take one child or try it with both? Well, on our quest to never hold our son back and try as much as we can in order to continually help him grow and develop, we decided to brave this as a family, along with our cousins that were in town as well. My sweet boy, walked into the theater, gripping his ipad aka security blanket, and we braced for the ever likely quick escape should it need to happen. As soon as you began, my boy looked up from his ipad and smiled, a pure and genuine smile. When he grew overwhelmed he went back to his ipad, all the time tapping his foot to the rhythm of each and every song. He made it thru the whole musical, with one small and thank goodness quiet request for his crackers and a random my little pony alert that somehow went off on his silenced ipad. As we prepared to leave, I asked him if he wanted to
say goodbye to the cast and he very directly said no. But as we got him into the car, that smile returned, and when I asked if he like the show, a very excited and joyous “yes!!!!” came flying out from within him. Thank you all for an excellent performance today – to be a part of a children’s musical might not always feel as glamorous as some of the “bigger name” shows, but to my little boy you just introduced him to the world of musicals, and I could not be more grateful. Although there may have been times that he seemed glued to that ipad, he is still humming the songs now as I type this message to you all. Thank you for a great experience for both our children!! Good luck to all of you on your travels and know that there is a little boy from Northern Maine has found a new love of musicals because of you today.
We stepped out of our comfort zone that day – and no, we didn’t soar to the stars, the world didn’t stop turning, parades were not thrown in our honor – but we succeeded. In that small theater the four of us grew that day – something we will not forget for a long time. So thank you Junie B Jones – for your glasses, for your juggling, for your top secret personal beeswax, and for helping my family step out of the comfort zone and into a place where the real magic can happen.
“The Power of Words”
Summer vacation, compounded with long holiday weekends often time mean routines thrown out the window, and for Garrett a general feeling of chaos and instability. This finally came to a head this morning as he was struggling horribly upon coming downstairs, and as I tried desperately to bring him some comfort, I whispered the phrase, “I know honey, I know.” My boy sat straight up, locked his deep blue eyes on mine, and said with certain authority not typical of a 6 year old, “No you don’t know”.
And he was right.
So often we say such phrases to bring comfort to those around us struggling, and so many times yes we do know – I know what it is like when Kaeleigh falls and scrapes her knee because that was me how many years ago. I know what is feels like when a bee stings, I know what is feels like to have sore tummy, and a few years from now I will know what it will feel like when she comes home crying of a broken heart. But for Garrett, there are many things I don’t know and this morning was hard reminder of that fact. I don’t know what it must feel like to be constantly overloaded by his senses, to the point that if the television is over a certain volume level, he screams mercilessly until we turn it down. I don’t know what it is must feel like to not be able to slow my body down enough to sleep through the night, something that has occurred with less frequency, but still we have those nights that his light turns on and we can hear him pacing above us. And I have absolutely no idea how frustrating it must be to not be able to communicate his basic needs and wants in a way that those around him can understand. Yes, his speech has grown by leap and bounds over these past few years, but so many times we ask him to repeat himself, as he struggles with pronunciation, and I can see the frustration in his face as he realizes we still do not understand him.
This is something I strive to constantly remind myself of, and like today, there are days that I forget how a simple phrase can be somewhat detrimental to a child that needs support not assumptions. On our quest to advocate and support our son, we must remind ourselves to never let our own voices or thoughts outshine his, because we don’t know what he is feeling, experiencing, or trying to communicate. We cannot let ourselves overshadow him and if we aren’t careful, we will. And that would result in a tragedy far worse than I care to imagine. Instead of giving him a voice, we would, in essence, take it away. And that simple cannot happen.
So, take my mistake as a lesson – be wary of phrases like “I know” or “it is okay” because in reality, you don’t know, and at that very moment it is not okay. Instead replace this with “I am here” or “it may not be okay now, but it will be” because those are the phrases of support. Those show your child or your loved one, that although you may not understand completely, you are there beside them, loving them, and giving them anything they need to get through those moments. That is what they need the most – to know someone is there....not in front of them, not veiling them, but rather right beside them, offering the support they need to stand on their own and be heard. And remember that we don’t know – but if we listen very carefully, one day we might be able to understand.
June 27, 2015
Today was rough. And by rough I mean never ending meltdowns that including screaming and crying that could push any adult to the absolute brink of tolerance and patience, only to be brought back in by the fact that the little person expressing all of this is desperately seeking something that they are not getting. And what made today far worse, was that it was not Garrett struggling, but rather it was Kaeleigh, our often labeled and quite unfairly “easy one”. The child that we say so often is so good with all that is thrown her way, balances her life in ways better than most adults do, and is not the one we have to “worry about” as much as we do with Garrett. And my goodness, we have made a mistake over these past years, a mistake that I fully admit and take ownership for, not one done on purpose but one that happens inevitably when you have one child that demands so much more time and energy, that often such small things are overlooked with the other. And as much as we try, we as parents are so far from perfect, and in the midst of balancing all of this, we make mistakes. During her earth shattering meltdown today, that started so simply over a Pinterest project that she was nagging me over and over for – my child lost it, completely and utterly lost it, because she wanted attention. And I didn’t see it.
For the past three years, all our lives have taken a backseat to Garrett’s therapies, his appointments, his school schedule, his life. As parents we do everything we can to give our children the tools and resources to do as much as we can to help them, often ignoring the toll it takes on our personal lives because in the moment all that matters is helping your child. But, for three years Kaeleigh has suffered at the hand of this – having to leave stores and restaurants when he has a meltdown, having to postpone activities if he is having a bad day, and most horribly missing out on events because he had therapies that were so crucial to continue his growth. We try our best to have special time or outings with her, but they will not replace all that she has lost. They will not replace all she has had to sacrifice over the past three years. And that is probably the hardest part for me to swallow in all of this. I can handle the sacrifices I make because I have lived my life, and now it is time to take care of my children, but this poor sweet 7 year old should not have to make sacrifices. And she does, time and again, because that is life. And sometimes life really stinks.
I so often say how much life would be easier if we all came out with little instruction books – guides to each and every person so we will know how to handle everything that is thrown our way. “Flip to page 50 to handle temper tantrum # 1726” – wouldn’t that be nice? But, how little growth we would all have it life was so simply spelled out for us in such a mechanical way, and we as humans are anything but mechanical. We feel, we love, and we hurt – and learning to work with each one of those emotions is probably one of life’s toughest challenges. I know we are not alone in what we are dealing with right now, but this is one of those topics that is often not discussed, only quietly murmured about with a best friend or spouse. But we need to start these conversations, because Kaeleigh is not alone – so many of the families I meet have multiple children, children that by no intentional fault are often overshadowed by the needs of one particular sibling. And we need to help each other find the balance and find the answers – because they are counting on us.
We are not perfect, we are only human, and unfortunately we cannot go back in time and change things. But we can start new beginnings. And sometimes those new beginnings can help to heal the time that was lost. Tomorrow, I make my girl her Pinterest project. Tomorrow, I make her project the priority and remember to see beyond the words when she has those tough moments because there is so much fueling those emotions that can no longer be overlooked. And tomorrow, we will all grow because this is what family is all about.
June 22, 2015
A couple weeks ago I was approached to start this blog, and was so deeply excited to combine a love of writing with my family’s personal journey on the ever winding road we refer to as autism. That first night, I put my children to bed, turned on some good music, grabbed a drink, and sat down to type....and nothing came. Two hours of starting sentences and deleting them, I found myself frustrated and feeling overwhelmed. So many thoughts, so many starting points – where do I even begin? Off and on for the past two weeks I have sat at this computer, only to stare blankly at the screen and walk away feeling defeated by my inability to share the all too numerous thoughts swirling in my head. And then this morning, and I was sleepily scrolling thru my facebook feed on my phone, knowing that any moment the clamoring of feet would be heard bounding down the stairs on this first official day of summer vacation, I saw an advertisement for an institute that works with autistic individuals and I had my starting point. I read the first sentence -
“I used to have severe autism. My awesome niece used to be on the spectrum, too (though, when my sister and her husband adopted her as a baby, they had no idea). We both recovered.....”
And from there my thoughts instantly came together. Although this institute may pride itself on “recovering” individuals from autism, it is definitely not for me or my family. My son does not need to be recovered – he has never been lost. Six years ago, a beautiful blue eyed, blond haired boy was born on a rather boring Friday night in the county and he has done anything but lead a boring life. Diagnosed at three, Garrett was characterized as moderate to severely autistic, with very low verbal communication, numerous sensory processing issues, and some physical difficulties, as well as absence seizures which were diagnosed around the same time. From the day he was born until this rather gray and dreary Monday morning, I have never once wanted to “recover” him. He has been here all along, in his way, living life each and every day with a twinkle in his eye and always with that beautiful smile. It was not him that needed to be recovered from autism – it was me. I needed to recover from all that came with the diagnosis – the anger, the self-pity, the despair, and the feelings of hopelessness. I spent a good week grieving everything I thought I had lost, and remember sitting alone in my bedroom and deciding then and there that I could either run from this or embrace it. I chose to embrace autism, the good, the bad, and the sometimes really ugly because that meant embracing my son. And from that moment, I began to see Garrett in a much different light. His strength, his perseverance, his unwavering spirit, and most importantly the beautiful world that he lived in, that I so often overlooked. I not now, nor ever will try to change him, to “recover him back from autism” because that is not my role in life. My role is to give him the tools, resources, and people he needs to help him achieve the best life that he can, a life that he chooses. As a very wise friend so often reminds me, it is my job to listen and to never silence his voice. Because although it might not always be there in the traditional way that I imagined, it is there each and every day. And it is powerful. And it matters.
This is not “my journey”, but rather “our journey” that I will share with you all, because in all honesty these are his stories, his growth that I document in which my husband, my daughter, and I get to be a part of each and every day. And I plan to do so with a lot of honesty, a little bit of humor, and a whole lot of love – because that is how we live our lives. We live in the moments because we love in the moments. And that is a pretty good way to live. It may not be perfect, but it is ours and we would not have it any other way. Welcome to our journey.
Maeghan's Blog by Maeghan Swanson
Maeghan's family photo taken approximately six years ago. (2010)
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